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   News & Information
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Experiences
with epilepsy Meetings & Events Research Reading Room Contributions to AER
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In a past newsletter I challenged our newsletter audience to take part in making some changes in the world of epilepsy, to take control of the way epilepsy affects them by joining forces with us to increase epilepsy research. To convince others to support our efforts we must first make them aware of the problems. I have a very specific way for each and every one of you to do that from your own home - tell your story. Send the story of epilepsy in your life to the AER at the address below. Those of you who have the disease, tell what it is like, what caused your epilepsy, how and when epilepsy appeared in your life, what the limitations are, what your feelings are, what you would need to make life better, what you have lost and gained. Those of you who live with someone who has epilepsy or have a friend with epilepsy, tell about your experience, frustrations, feelings. Those of you in epilepsy health care tell what you see each day and how that makes you feel. All of you tell how improvements in treatments or a cure for epilepsy would change your life. These stories will be featured on-line - no names if you prefer - and if there are enough, the Alliance could publish them as a book to be sold to raise money for research. Don’t worry about spelling, grammar or punctuation, just tell your story - any length. Parents, maybe you could help your young ones. Include your name, address and phone number. Also include pictures if possible, especially a family one.
What can the Alliance
do for you? But, you say, you aren’t a scientist, neurologist, mathematician, biologist, etc. You can’t do the research that is necessary to make those changes come to be. That’s where the Alliance fits in your life. The AER is an opportunity for you to take control of the way epilepsy affects you or someone you care about. Even if you can’t actually do the research, you can get it done by raising money to fund that research. You can encourage those who are doing the research by letting them know how important it is. You can make others aware of the need for epilepsy research. Research is the only way changes will occur. I challenge you to take back the control in your life that epilepsy took away. Let’s work together to make changes in the way epilepsy affects our lives. It can be done.
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What can you do? Tell your story! 